III. Throughout Ukraine: Ensuring Quality
of Pain Treatment Services

The Story of Lyubov Klochkova

Lyubov, a woman in her mid-forties, was a tireless advocate
for health rights. In her native city in Western Ukraine, she set up and ran
successful health and legal service programs. But she spent much of her time
traveling around Ukraine, Russia, and other parts of the former Soviet Union to
share her expertise with others.

In 2008, as she was attending a conference, Lyubov suddenly
felt desperately ill. Back home, medical tests found metastatic cervical cancer
for which she was immediately treated. Several months later Lyubov returned to work;
doctors thought her cancer was in remission.

But in early 2009 it became clear that all was not well. Rarely
sick before, Lyubov now suffered colds that she could not seem to shake. By March
a problem urinating sent her back to her doctor. Examinations showed that her
cancer had recurred and that a tumor was blocking her kidney.

At around the same time Lyubov developed increasingly severe
pain. At first her doctors tried to treat it with over-the-counter drugs and
weak opioids that provided limited relief. Although her doctor recommended morphine
Lyubov was ambivalent. She was worried that her body would get used to the
medication and it would not be effective when she needed it most. A stoic
woman, she continued to work, taking taxis to meetings to avoid having to walk.
But by the end of May she had become too sick to leave the house.

With the pain now too great to bear, Lyubov agreed to take
morphine.[76]
“Why did I doubt for so long whether or not to start morphine?” she
said when she got her first dose.

But the relief did not last long. Her doctor had prescribed
one shot of morphine per day giving her relief for just about four hours. Over
the next few weeks, as Lyubov kept complaining of persistent pain, doctors
added an extra shot each week until she finally received five ampoules of
morphine per day. Every morning, a nurse would visit the apartment and, in
violation of Ukraine’s drug regulations, left the supply of morphine for
the day. Lyubov’s husband would administer the medication when she needed
it.

But five ampoules per day were not sufficient to control
Lyubov’s pain. Her relatives were forced to ration the medication for
when she needed it most. Lyubov would try to tolerate her pain. Her daughter
told Human Rights Watch:

The daily dose was sufficient at most for three [effective]
doses; in other words, for twelve hours. Because they brought us too little
morphine we tried to save most of it for the night. During the day, we gave her
drugs from the pharmacy and a minimal dose of morphine. Most of it we left for
the night.[77]

By the morning, the morphine would be finished and Lyubov
would anxiously wait for the nurse to come. Lyubov’s daughter said:

The nurse [normally] came at 10 or 11 a.m., but sometimes
she was late. Mama would slumber at night. By 8 a.m. she would sit up rigid [from
the pain] and wait for the nurse to [arrive with the morphine].[78]

A few weeks before her death Lyubov made an unpleasant
discovery: she had reached the maximum daily dose for morphine and her doctor would
not be able to prescribe any more ampoules. As Lyubov’s pain intensified
the five ampoules gave her less and less relief. Lyubov and her daughter left
no stone unturned trying to get a larger morphine dose:

We of course asked for a sixth ampoule. When they told us
that five was the maximum we tried to find out through [a palliative care
expert] whether that’s true, how that’s determined, and how we
could get more of the medicine. Unfortunately, nothing worked out. The doctors
said that they don’t have the right to prescribe more. We discussed it
with the oncologist, the gynecologist, with all of them. We tried to mobilize
everyone we could.[79]

But the doctors would not budge. Lyubov had to somehow make
do with an increasingly inadequate amount of morphine. For several weeks she
faced great suffering until, during her last few days, her kidneys could no longer
clear the morphine from her body and her pain seemed to subside. She died in
late July 2009.

Comparing Ukrainian Pain Treatment Practices with WHO
Principles

The WHO Cancer Pain Ladder, a treatment guideline first
published in 1986, is an authoritative summary of international best pain treatment
practices available.[80] Based
on a wealth of pain treatment research that spans decades, it has formed the
basis for cancer pain treatment in many countries around the world. It has also
been used successfully to treat other types of pain.[81]
The treatment guideline is organized around five core principles for treating
pain (see Table 4). The European Society for Medical Oncology (ESMO) and the
European Association of Palliative Care (EAPC) have also developed cancer pain
treatment guidelines, which follow these same core principles.[82]
If followed, WHO estimates, the ladder can result in good pain control for 70
to 90 percent of cancer patients.[83]

Our research has found that standard pain treatment
practices in Ukraine deviate fundamentally from World Health Organization
recommendations, with all five core principles articulated in the treatment
guideline widely ignored.

Under the right to health, governments must ensure that pain
treatment be not only available and accessible, but also that it be provided in
a way that is scientifically and medically appropriate and of good quality.[84]
This means that healthcare providers should provide pain management in a way
that is consistent with internationally recognized best practices. Governments,
in their turn, have to create conditions which allow healthcare providers to do
so.

Principle 1: Pain medications should be delivered
in oral form (tablets or syrup) when possible.

Patients
receive morphine by injection only.

Principle 2: Pain medications should be
given every four hours.

Most
patients receive morphine once or twice per day, in exceptional cases three
or four.

Principle 3: Morphine
should be started when weaker pain medications prove insufficient to control
pain.

Patients
are often started on morphine only when curative treatment is stopped,
irrespective of pain levels.

Principle 4: Morphine dose should be
determined individually. There is no maximum daily dose.

Patients are routinely injected with one ampoule of morphine at the
time, irrespective of whether this is too little or too much. Many Ukrainian
doctors observe a maximum daily dose of 50 mg of injectable morphine, even if
it is insufficient to control the patient’s pain.

Principle 5: Patients
should receive morphine at times convenient to them.

Administration
of morphine depends on work schedules of nurses.

Principle 1: “By Mouth”

If possible, analgesics should be given by mouth. Rectal
suppositories are useful in patients with dysphagia [difficulty swallowing],
uncontrolled vomiting or gastrointestinal obstruction. Continuous subcutaneous
infusion offers an alternative route in these situations. A number of
mechanical and battery operated pumps are available.

The first principle of the WHO cancer pain treatment
guideline reflects a fundamental principle of good medical practice: the least
invasive medical intervention that is effective should be used when treating
patients. As injectable analgesics provide no benefit over oral pain
medications for most patients with chronic cancer pain, the WHO recommends the
use of oral medications. Also, using oral medications eliminates the risk of
infection that is inherent in injections and is particularly elevated in patients
who are immuno-compromised due, for example, to HIV/AIDS, chemotherapy, or
certain hematologic malignancies. When patients cannot take oral medications
and injectable pain relievers are used, it recommends subcutaneous
administration (under the skin) to avoid unnecessary repeated sticking of
patients.[86] Hence,
oral morphine, which the WHO considers an essential medicine that must be
available to all who need it, is the cornerstone of the treatment guideline.[87]

In Ukraine, however, oral morphine is not available at all.
In fact, it is not even a registered medication. A recent survey of European
countries found that Armenia, Azerbaijan, and Ukraine are the only countries in
Europe where oral morphine is altogether unavailable. Armenia is currently
looking for a supplier of oral morphine.[88] The
only non-injectable strong opiod analgesics available in Ukraine are Fentanyl
patches that release the analgesic through the skin but at a cost of about 267
to 467 hryvna (US$33.75 to 58.38) per patch (active for three days). They are unaffordable
for most Ukrainians and are not available in government clinics and most
pharmacies.[89]

While the WHO recommends that injectable pain relievers
should be injected under the skin, standard practice in Ukraine is to give
morphine by intramuscular injection. This means that patients who get morphine
every four hours, as recommended, are unnecessarily injected six times per day.
On average, patients with advanced cancer who have severe pain require 90 days
of treatment with morphine, so a typical patient receiving morphine every four
hours would get injected in the muscles 540 times over that period. In
interviews, patients and their families said that receiving multiple injections
in the muscles was unpleasant, but they were also resigned to the fact that the
alternative—unrelieved cancer pain—was far worse.

Patients who are emaciated due to their illness face
particular difficulties with intramuscular injections as they have little
muscle tissue left. In such patients it may be challenging to vary the place of
injection and there is a risk that part of the morphine will end up outside the
muscle tissue, resulting in poor absorption of the medication and inadequate
pain control. In interviews, both healthcare workers and patients spoke of
these difficulties. Lyubov’s daughter, for example, told Human Rights
Watch:

The last two weeks we didn’t inject in the behind
anymore. The morphine was no longer absorbed. So we started doing intravenous
injections in the hand but that’s painful … Of course, if you
compare the pain from the injection to the cancer pain it’s not
comparable…[90]

Vlad’s mother, Nadya, said that multiple injections of
morphine and other medications over the course of several years had turned her
son’s behind into a “mine field.” “There was nowhere to
inject anymore. It no longer absorbed the medication. The last months we
injected in the legs, from the thigh to the knee and in the hand,” she
said. One of the injection sites became infected and developed a small hole in
the hand. “We only just cured it when he died.”[91]
Svitlana Bulanova said that toward the end of her niece Irina’s life,
they “had no place left to inject.”[92]

Healthcare workers acknowledged occasional problems due to
emaciation. Some said that they alternated the place of injection in such
cases. For example, a nurse in district 4 said that they would do one injection
“in the shoulder, another in the hip. We switch around.”[93]
Several others said that they would switch to subcutaneous injections in such
situations.[94] Most
healthcare workers we interviewed said that they wished they had oral morphine
tablets, saying it would significantly simplify their work. The oncologist in
district 5 said: “Patients often ask for strong pain medications in
tablets but we [don’t have them].”[95]

Principle 2: “By the Clock”

Analgesics should be given “by the clock,” i.e.
at fixed [four hour] intervals of time. The dose should be titrated against the
patient’s pain, i.e. gradually increased until the patient is
comfortable. The next dose should be given before the effect of the previous
one has fully worn off. In this way it is possible to relieve pain
continuously.

Some patients need to take “rescue” doses for
incident (intermittent) and breakthrough pain. Such doses, which should be
50-100% of the regular four-hourly dose, are in addition to the regular
schedule.

The second principle reflects the fact that the analgesic
effect of morphine lasts four to six hours. Thus patients need to receive doses
of morphine at four-hour intervals to ensure continuous pain control.

This principle is not followed in rural areas because of the
requirement in Ukraine’s drug regulations that a healthcare provider
administers the morphine to the patient.[97] Our
research also found the same to be true in urban areas. Even in places where
population density is much greater and distances smaller, Ukraine’s
healthcare system does not have the capacity—or is unwilling to dedicate
the resources—to visit patients at home every four hours. So most
patients get just one or two doses of morphine, leaving them without adequate
pain control for sixteen to twenty hours every day. Even the
“lucky” patients who get three or four doses of strong pain relievers
daily face significant intervals between injections when their pain is not
properly controlled.[98]

Table 5 shows the frequency with which morphine injections
are provided to out-patients through a number of hospitals that we and our
partners visited.

TABLE 5

Hospital

Maximum frequency

Delivery System

Therapeutic
department of a Kharkiv polyclinic

Nor
more than two injections per day.

A
team of nurses and drivers delivers pain medications to patients.

Rivne
polyclinic

Generally
two injections, morning and evening. Maximum is four.

A
team of nurses and drivers delivers the injections to patients.

District
1

Generally
one injection, rarely two.

Ambulance
delivers injection in evening. If second injection is prescribed, nurse has
to administer.

District
2

One
or two.

Ambulance
delivers injection in evening. If second injection is prescribed, nurse has
to administer.

District
3

Up
to three.

Ambulance
delivers throughout district.

District
4

Three
to five.

Ampoules
are given to patients or relatives for self-administration.

District
5

One
or two (up to six if nurse offers take-home supply).

Nurses
visit; occasionally, a take-home supply is provided.

District
6

One
or two.

A
team of nurses and drivers delivers injection to patients at home but only in
the district town.

While the requirement that healthcare workers administer
every dose of morphine to the patient poses the greatest barrier to following
the WHO recommendation that morphine be administered every four hours,
insufficient training of healthcare providers is another significant obstacle.

Our interviews with healthcare workers suggest that most are
unaware of the WHO’s recommendation for four-hourly administration of
morphine. Standard procedure appeared to be to start patients on a single shot
of morphine in the evening and then add a second injection and more if patients
complain of persistent pain. None of the healthcare workers interviewed felt
that this was inappropriate or substandard medical practice. For example, the
nurse at a polyclinic in Rivne told us:

Patients generally get two ampoules
per day: in the morning and evening. It usually begins with an evening dose at
9 or 10 p.m. Sometimes it happens that the next day, the patient already asks
for more because it was enough for the night but [not for] the whole day
… Before 10 p.m. severe pain syndrome begins again. Then a new
prescription is prepared for an extra dose.[99]

A man whose mother died of cancer in 2008, explained how
doctors prescribed morphine:

They registered us. Then
the panel of doctors met [to discuss my mother’s case] and a decision was
made to prescribe morphine. At first… one injection per day. Then, if
after a week it isn’t enough in the opinion of the panel, the dose is
increased. So there is a correction of the dose over time. So we eventually got
two milliliters per day, one milliliter in the morning, one in the evening.[100]

Bridging the Intervals between Morphine Injections

The Case of Tamara Dotsenko: The
Difference Regular Administration Can Make

Tamara Dotsenko, a 61--year-old breast cancer patient,
developed severe pain in her spine and back when her cancer metastasized to
the spinal cord. In her home village, the health clinic managed her pain by
giving her an injection in the evening.

Tamara told Human Rights Watch: “In the evening
they would give me a shot. I would sleep well and didn’t feel pain. But
then during the day it was a different story: pain, pain, pain and pain
… I wanted to cry the whole time …”

The pain medications they gave her during the day wore
off too quickly to provide much relief.

When Tamara could no longer take care of herself, she
was referred to the hospice in Kharkiv. There, she got pain medications
regularly.

She said:

“Here I get totally different pain treatment.
Every six hours they give me an injection. It does not fully control my pain
but it is much better than what I had at home. It’s better than having
to bear that pain.”

Healthcare workers and patients told Human Rights Watch that
they use a large array of medications, including basic pain medications, weak
opioids, muscle relaxants and sedatives, to try to dull the pain in the
intervals between morphine doses. For example, a nurse at a polyclinic in
Kharkiv told Human Rights Watch: “We never visit patients more than twice
a day [to administer morphine]. But a regular nurse will visit to do other
injections, other analgesics or muscle relaxants.”[101]
She added, erroneously: “After all, morphine … injecting it three
times per day is not really all that recommended.” The oncologist in
district 3 said that if the three injections of morphine that the ambulance
service can deliver each day are insufficient, “we use cocktails: dimedrol
with analgin [an antihistamine with a weak pain medication], baralkhin [a weak
pain medication], sibazon [diazepam, a sedative].”[102]

While the WHO treatment guideline provides for the use of
weak pain medications and other adjuvant medications in addition to a strong
opioid analgesic to enhance its analgesic effect or treat specific problems,
they are not recommended to be used as an alternative as they are incapable of
providing adequate relief.[103]
Medications like antihistamines and tranquillizers may be appropriate to treat
specific health conditions, such as allergies, nausea, or anxiety, but in
Ukraine they appear to be used often primarily to make patients drowsy and dull
the pain. Such use is not consistent with the WHO treatment guideline.

Principle 3: “By
the Ladder”

The first step is a non-opioid. If this does not relieve
the pain, an opioid for mild to moderate pain should be added. When an opioid
for mild to moderate pain in combination with non-opioids fails to relieve the
pain, an opioid for moderate to severe pain should be substituted. Only one
drug of each of the groups should be used at the same time. Adjuvant drugs
should be given for specific indications…

If a drug ceases to be effective, do not switch to an
alternative drug of the same efficacy but prescribe a drug that is definitely
stronger.

According to the WHO
guideline, the intensity of the pain should determine what type of pain
medications a patient receives.

For mild pain, patients
should receive over-the-counter medications like Ibuprofen or Paracetamol; for
mild to moderate pain weak opioid, like codeine; and for moderate to severe
pain a strong opioid, like morphine. If over-the-counter pain medications or
weak opioids are ineffective, a stronger type of pain medications should be
provided. In the words of the guideline, “the use of morphine should be
dictated by the intensity of pain, not by life expectancy.”[105]

Leading pain experts have
estimated that about 80 percent of terminal cancer patients will require
morphine for an average period of ninety days before death.[106] But data we collected from several districts in
Ukraine, including districts where hospitals have narcotics licenses, suggest
that far fewer than 80 percent of terminal cancer patients get morphine and
that those that do generally receive it for far less than 90 days. This
suggests that many patients in Ukraine who face moderate to severe pain are
started late on morphine or do not receive the medication at all even when it
is available. The data is shown in Table 6.

Interviews with healthcare workers support this conclusion.
For example, a doctor at a specialized cancer hospital said:

We try to use morphine
very rarely because, as all narcotics, it suppresses the breathing center. For
cancer patients that is not desirable so it is a last resort. No more than
15-20% of [terminal cancer] patients get it. Generally, we try to make do with
non-opioid analgesics or with synthetics…[107]

The doctor’s reluctance to use morphine is based on a
misconception about the medication’s effects on the breathing center.
According to the WHO:

pain is the physiological antagonist to the central
depressant effects of opioids. Clinically important respiratory depression is
rare in cancer patients because the dose of the opioid is balanced by the
underlying pain.[108]

Pain does not just affect terminal cancer patients: a 2007 review
of pain studies in cancer patients found that more than 50 percent of all cancer
patients experience pain symptoms.[112]
Testimony from healthcare workers suggests that doctors rarely prescribe
morphine to patients who are still receiving curative treatment. A doctor at a
polyclinic in Kharkiv, for example, told Human Rights Watch that “the
prescribing of a narcotic drug is usually reserved for terminal
patients.”[113] The
doctor from Rivne said that “pain [in patients still receiving curative
treatment] is mostly treated with curative interventions, with chemotherapy or
radiation.”

A doctor at an inpatient medical oncology unit at the same
hospital told Human Rights Watch that she believes that patients who need
strong opioids “are not in my patient profile. We are not a hospice.
Symptomatic treatment happens at home [after release from the hospital].”[114]
Although she acknowledged that she frequently encounters severe pain in her
patients, particularly those with bone metastases, she rarely prescribes
morphine. She told Human Rights Watch: “We give non-opoid medications
like kitonol or dexalgin [weak pain medications]. If people have a clear pain
syndrome, we give tramadol. We try to avoid narcotics.” The doctor
estimated that only one patient in the past six months had been prescribed
morphine or an opioid of similar strength.

The reluctance of doctors to prescribe strong opioids to
patients who are still receiving curative treatment appears to be related to
fears that patients will become drug dependent. However, these fears are
unfounded, and the WHO treatment guideline states that “wide clinical
experience has shown that psychological dependence [drug dependence] does not
occur in cancer patients as a result of receiving opioids for relief of pain.”[115]

Development of physical dependence and tolerance to morphine
does occur but, according to the treatment guideline, are “normal
pharmacological responses” and “do not prevent the effective use of
these drugs.” If curative treatment successfully addresses the source of
the pain, the use of opioids can be tapered and, eventually, stopped.[116]

Principle 4: “For the Individual”

There are no standard
doses for opioid drugs. The “right” dose is the dose that relieves
the patient’s pain. The range for oral morphine, for example, is from as
little as 5 mg to more than 1000 mg every four hours. Drugs used for mild to
moderate pain have a dose limit in practice because of formulation (e.g.
combined with ASA or paracetamol, which are toxic at high doses) or because a
disproportionate increase in adverse effects at higher doses (e.g. codeine).

Pain is an individual experience. Different people perceive
pain differently; they metabolize pain medications in different ways; and
cancers vary from person to person, leading to vastly divergent types and
intensities of pain. With so many variables, only an individualized approach to
pain treatment can ensure the best relief to all. The WHO therefore recommends
that doctors “select the most appropriate drug and administer it in the
dose that best suits the individual.”[118]

However, our research suggests that this recommendation is
routinely ignored in Ukraine. Many doctors start patients on a standardized
dose of morphine—one that, paradoxically, is unnecessarily high for
many—and some arbitrarily cap the daily dose of injectable morphine at a
maximum of 50 mg, as wrongly recommended by the Ministry of Health and the manufacturer,
even if that is inadequate to control the patient’s pain. Both constitute
poor medical practice that leads to unnecessary patient suffering.

Standardized Starting Dose

Finding the right dose of morphine for the individual
patient is crucially important: if the dose is too low, the patient's pain will
be poorly controlled, if too high, the patient will experience unnecessarily
severe side effects, including drowsiness, constipation, and nausea. With the
right dose, relief is maximized, side effects are minimized, and any drowsiness
or confusion should clear up within three to five days.

However, our research suggests that it is common practice in
Ukraine for doctors not to determine the appropriate dose on an individual
basis. Instead, they prescribe one ampoule of morphine, which contains 8.6 mg
of injectable morphine, equivalent to 25.6 mg of oral morphine.[119]
This means that some patients receive too much morphine and face needlessly
debilitating side effects, while others receive doses that are too small to
give full relief.

Viktor Bezrodny, a man whose mother died of gallbladder
cancer, told Human Rights Watch that doctors never tried to establish the right
dose of morphine for his mother but just prescribed the standard dose of one
ampoule. But the morphine injections made her drowsy. He said:

She would sometimes refuse the injection because she
didn’t want that state of cloudiness. She kept it [morphine injection] as
a last resort. She would say: ‘Let’s take these drops … everything
hurts but let’s do the injection later.’[120]

Bezrodny, himself a doctor, told us he doubted any doctor
would prescribe part of an ampoule: “If I prescribe a half ampoule I have
to somehow account for the rest…”[121]

Roman Baranovskiy, whose mother-in-law died of metastatic
lung cancer in 2009, told us that he divided the ampoules himself and injected
them in installments. His mother-in-law’s hospital allowed patients to
take home a three-day supply of morphine and administer it themselves. He said:

I did not inject two ampoules right away [as
prescribed]. I divided them. If you give a large dose, the person falls
asleep … [People with pain] when they get relief will relax anyway and
become sleepy. But when the person fades and can’t open their eyes,
that’s unnecessary. Even one ampoule was sometimes too much.[122]

Most doctors interviewed said they never prescribe partial
ampoules but contended that the practice of first prescribing omnopon or
promedol, opioid analgesics that are less potent than morphine,
constituted a form of titration. A cancer doctor in Rivne, for example, said
that he does not prescribe half ampoules because of the need to account for the
other half. But he said that he usually starts by prescribing omnopon
and promedol and only prescribes morphine when these are no longer
effective.[123]

Maximum Daily Dose

While the WHO treatment guideline specifies that the
‘right’ dose is one that “relieves the patient’s pain”
and that some patients may need “more than 1000 mg [of oral morphine]
every four hours,” the Ukrainian manufacturer of morphine and
Ukraine’s Ministry of Health both recommend a maximum daily dose of 50 mg
of injectable morphine, equivalent to 150 mg of oral morphine.[124]

The maximum daily dose recommendation is particularly
problematic because it is very low. Since most patients require 10-30 mg of
oral morphine every four hours, or 60 to 180 mg per day, even patients who fall
on the high end of this typical range in Ukraine exceed the maximum dose
recommendation if they get their medications every four hours.[125]
Doctors at hospices in Kharkiv and Ivano-Frankiivsk, which observe WHO’s
recommendations, estimated that about 10 percent of their patients require more
than the maximum dose recommended.[126] A 2010
Human Rights Watch survey of barriers to palliative care found that Ukraine and
Turkey were the only two of ten European countries surveyed to impose a maximum
daily dose for morphine.[127]

Asked whether they followed the recommendation,
doctors’ responses varied greatly. Some said that they did not, while
other insisted that they had to. One doctor, for example, told Human Rights
Watch that his polyclinic ignores the maximum dose recommendation, citing what
he called a “basic principle in medicine” that “no matter
what the health condition is, patients should not suffer.”[128]
Another oncologist said: “It’s possible [to prescribe more] when
patients need it. The main thing is to professionally justify the prescription
in the patient’s file so as to avoid problems with inspections.”[129]
He recalled a patient who had been on 12 ampoules (103.2 mg) of morphine daily
for a five-year period.[130] But
the oncologist in district 3 said that his clinic cannot prescribe more than what
is recommended, even though some of his patients, primarily those with
metastases in the bones, cannot achieve good pain control within the
recommended daily dose. He said:

Often these patients are in the hospital. There, they
receive narcotics three or four times [per day] and [healthcare workers]
constantly provide additional analgesics: weak, strong analgesics. They mix.
But we never prescribe more than recommended.[131]

The oncologist also expressed the erroneous opinion that
giving more than the recommended daily dose would be ineffective and negatively
impact the patient’s breathing and organs.[132]
As Lyubov’s case demonstrates, where doctors do strictly follow the
recommendation, the result can be great suffering.

But our research found that some doctors are even reluctant
to prescribe 50 mg of injectable morphine daily. Vlad’s mother had great
difficulty getting doctors to prescribe her son more than three ampoules of
morphine, even though he continued to have excruciating pain. She described the
battles she had to fight:

I demanded a fourth ampoule because he was in bad shape. A
panel of doctors came to our house. The chief doctor … took off his
underpants, lifted up his clothes, and checked whether he was abusing drugs.
Then she accused me of selling drugs.[133]

Rather than recognize the morphine was insufficient for
controlling his pain, doctors first accused Vlad of being a drug addict, then
his mother of selling drugs. She told Human Rights Watch that she finally went
to the city health department and a member of the local parliament to receive
permission to switch to a different hospital.

Eventually, doctors prescribed Vlad a fourth ampoule, but
even that was insufficient to control his pain and his mother had to again
fight doctors to prescribe a fifth:

I went to the chief doctor [of the hospital], the chief
medical officer. [There was] again a scandal. The doctors said: ‘A fifth
ampoule is an overdose [is too much]. Michael Jackson died of an overdose. Now
they’re prosecuting an innocent doctor. And no one is supporting that
doctor. It’ll be like with Michael Jackson.’ And I said: ‘But
he screams from the pain, disturbs the neighbors; you don’t know how he
howls, how much pain he has. People [neighbors] hear how he howls in the
apartment. I can’t be in the apartment. I will go crazy the way he
howls.’[134]

Finally, the hospital sent a group of doctors to their
apartment to determine whether a fifth ampoule was really needed. Vlad’s
mother said:

After the visit, there
was silence…. I waited and waited and they did not bring the fifth
ampoule. I went to the neurologist and said: ‘You’ve seen him.
Can’t you talk to the chief doctor?’ He did and they finally gave
us the fifth ampoule.[135]

Principle 5: “Attention to Detail”

Emphasize the need for regular administration of pain
relief drugs. Oral morphine should be administered every four hours. The
first and last dose should be linked to the patient’s waking time and
bedtime. The best additional times during the day are generally 10:00, 14:00
and 18:00. With this schedule, there is a balance between duration of analgesic
effect and severity of side effects.

To ensure quality of life for patients with pain, it is not
just important to get pain medications regularly but to get them at times that
fit their schedule. In order to maximize sleep at night, for example, patients
should take their medications shortly before bed time.

However, several healthcare workers and patients told us
that the last injection of morphine would typically be scheduled for 6 to 8
p.m. to accommodate nurses’ shifts. As morphine acts for just four hours,
that means that the effects will have worn off for these patients before
midnight, setting them—and their relatives—up for a restless night.
When Vlad was receiving three ampoules of morphine per day, for example,
healthcare workers determined that he would receive his injections at 9 a.m., 2
p.m., and 6 p.m. His mother said:

He often didn’t sleep at night. He’d be in
agony because of the pain. Then he would sleep long in the morning. So they
would arrive at 9 a.m. and he would be asleep. I would say: ‘Leave the
medication. I’ll take the syringe. When he wakes up, that’s when
it’s important for us to give him the injection. He’s still
sleeping.’ [But they would wake him up and] he would say: ‘Nothing
hurts right now. I’m sleeping. I don’t need it.’ But they,
like zombies, would insist: ‘No, it’s necessary. We will not come
another time. Your prescribed time is 9 a.m. So they would inject him while he
was sleeping because they had to do the injection and leave.

The chief doctor in district 3 acknowledged the importance
of providing pain medications when the patients need it most. He said that his
hospital tried to accommodate patients as much as possible:

At the request of relatives, we can do injections until 10
p.m. but not later … In the terminal stages the medication is not
sufficient if you give injections at 6 a.m., noon and 6 p.m. By midnight, he
will be screaming.[137]

But he noted that in places where regular nurses and drivers
employed by clinics, as opposed to the ambulance service, are responsible for
delivering pain medications, it becomes difficult to deliver them that late:

The driver works a
specific shift. [What happens] if morphine is prescribed for 6 p.m. and the
driver’s shift is over at 2:30 p.m. Why does he have to work after hours?
Or someone needs to pay him extra. But with our budget deficits…[138]

Some doctors and nurses told us they tried to accommodate
their patients by leaving ampoules or filled syringes with them or their
relatives, even though this violates Ukraine’s drug regulations. In such
cases, patients can choose themselves the best time to take the medication. For
example, Viktor Bezrodny told Human Rights Watch:

The nurse would come. In principle, she was supposed to do
the injection but she came at a time that was good for her but when, for
example, my mother might sleep. [She allowed me] to load the morphine into the
syringe and give her the injection when she actually needed it.[139]

Problems with Treatment of Non-Cancer Pain

While pain treatment for cancer patients in Ukraine is
severely inadequate, it is even worse for other types of patients due to a lack
of recognition amongst healthcare workers that severe pain is common in people
who suffer other health conditions and should be treated.

Our research found that doctors are often unwilling to treat
such pain, preferring to treat its cause. Under international human rights law,
all patients facing severe pain have an equal right to pain treatment,
irrespective of the type of underlying illness or condition.[140]
The story of Oleg illustrates the problems that many of these patients face.

The Story of Oleg Malinovsky

Oleg
Malinovsky with his dog before he became ill. Courtesy of Malinovsky family.

Oleg, a 35-year-old man from Kiev, has been
diagnosed with chronic hepatitis C and a range of other illnesses. Oleg’s
acute medical problems started in early 2008, shortly after he began treatment
for a hepatitis C infection. When he developed numbness in several fingers,
doctors hospitalized him for tests and treatment. At the hospital, he
contracted a staphylococcus infection, developed recurring high fevers and
experienced increasingly severe pain in his hip joints. The treatment he
received was not effective. On the contrary, his problems rapidly worsened.

A degenerative process
had started in his joints. Oleg’s pain then spread to his lower spinal
area before rapidly worsening in July 2008, several weeks after doctors started
rheumatology treatment. As any movement of his hips and knee joints caused
severe pain, Oleg was forced to lie completely still in his bed throughout the
day. His wife told us:

The pain was intolerable with any movement and became more
severe with every day because of the pathological process in his hip
joints. The pain affected his sleep, appetite, and his psychological
condition. He became very irritable and nothing could make him happy anymore. A
normal sneeze or cough caused him terrible pain … You could knock on the
wall, and if he was lying over there, he would scream [in pain]...[141]

At the Kiev City Rheumatology Center, where he was being
treated, doctors eventually agreed to give Oleg a small daily dose of morphine
to allow him to sleep at night. But he still faced undiminished pain at other times
of the day.

In March 2009 doctors surgically removed portions of the
bone in his stiffened joints, resulting in a reduction of pain and some
restored mobility. But in September 2009 Oleg again developed persistent and
severe pain, this time involving his wrists and elbows. Again, he had to keep
completely still in bed. He was unable to move his limbs, preventing him from
any activity whatsoever, including eating, washing, or reading. Oleg routinely
screamed in pain. Sometimes, the neighbors would knock on the walls because he
disturbed them. Oleg repeatedly told his wife that he wanted to die because he
could no longer bear the pain.

Over the next seven months Oleg and his wife repeatedly told
doctors at their public hospital about the pain he was suffering and asked them
to prescribe appropriate pain medications. But instead of prescribing morphine,
which had been effective before, his doctors procrastinated. They sent Oleg to
a psychiatrist to assess whether his depression and irritability were related
to an underlying psychiatric condition, and they sent him to drug treatment
doctors because they thought he was addicted to morphine, even though he had
not had any in more than six months.

When the psychiatrist and drug treatment doctor confirmed
that Oleg suffered from symptom-related depression rather than a mental
disorder and ruled out drug dependence, the chief of the clinic promised to
prescribe stronger pain medications. Nothing happened.

Eventually, in March 2010, Oleg’s pain improved
somewhat on its own. He never got strong pain medications, continues to be
bedridden, and experiences significant pain when he moves. Oleg and his wife
have filed complaints with the prosecutor’s office and courts in Ukraine
about the denial of appropriate pain treatment. So far, the courts have refused
to consider the complaints and the prosecutor’s office has not opened an
investigation.

Treating Pain in Patients with a History of Illicit Drug
Use

Patients with severe pain who use illicit drugs or
have in the past pose a challenge to healthcare providers. These patients
have a right to pain management, including with strong opioid analgesics
where clinically appropriate, just as any other patient does. But physicians
need to pay special attention to ensure that the pain treatment these
patients receive is effective and to minimize the risk of misuse of
medications.

At present, there are no international guidelines for
treating pain in people with a history of illicit drug use, but there is
significant clinical experience. Dr Steven Passik of Memorial Sloan Kettering
Cancer Center in New York, USA, is a leading expert on treating pain in
people with a history of illicit drug use. He recommends that physicians
conduct an individual risk assessment, such as the Opioid Risk Tool or SOAPP
(Screener and Opioid Assessment for Patients in Pain), to assess the risks of
starting a patient who may have a history of illicit drug use on strong
opioid analgesics. Based on the risk assessment, the physician should develop
a treatment plan that ensures good pain treatment and minimizes the risk of
relapse or misuse. He recommends the following precautions for patients with
a history of illicit drug use:

Put such patients on long
acting opioids, such as methadone, slow-release morphine, or fentanyl
patches.

Physicians
should carefully assess and monitor the patient’s dosage requirement.
People with a history of illicit drug use often have a significantly higher
tolerance for opioid medications or build up such tolerance more rapidly and
may thus require higher dosages to achieve adequate pain control. Patients
who receive doses that are too low are more likely to develop drug seeking
behavior and start self-medicating, which can easily slide into renewed
illicit drug use.

Physicians should
limit the number of pills the patient has in his or her possession at any
given time. Dr Passik said: “Giving someone with a history of illicit
drug use an unmanageably large supply of short-acting opioid pills is asking
for trouble.”

Physicians should
see such patients frequently to monitor the efficacy of and adherence to the
pain treatment as well as to assess possible illicit drug use. Potential
problems should be identified at an early stage and addressed in a timely
manner.

Physicians
should help get the patients who are active drug users into a treatment
program, including maintenance treatment and/or a twelve-step program.

Physicians
must avoid being perceived to be judgmental when it comes to illicit drug
use. The patient-physician relationship is a key factor in keeping a patient
with a history of illicit drug use from misusing pain medications.

Basu et al.
describe a similar approach to treating pain in people living with HIV who
have a history of substance abuse in “Pharmacological pain control for
human immunodeficiency virus-infected adults with a history of drug
dependence,” Journal of
Substance Abuse Treatment, vol. 32 2007), pp. 399-409.

Broader Palliative Care Services

The insecurity is so difficult. I don’t know
what’s coming. Sometimes I think I should ask someone for something and
take it and die. Sleeping is good. You forget your thoughts. Better sleep
than have all sorts of ideas.

—Tamara
Dotsenko

While physical pain is often the most immediate
symptom that patients with advanced cancer and other life-limiting illnesses
face, many patients also experience tremendous emotional, psychological, and
spiritual pain. With a number of basic and inexpensive interventions, palliative
care can often provide considerable relief of these symptoms.

In Ukraine, some psychosocial and spiritual services
exist in hospices and hospitals with palliative care beds, but they are
altogether lacking for most patients at home. The public healthcare system
focuses only on the physical condition of patients. A few lucky patients
receive such support from NGOs that offer home-based palliative care services.
The vast majority does not.

The lack of psychosocial care for patients at home is
puzzling given that Ukraine’s current system of delivering pain
treatment already involves nurses visiting such patients. At present,
however, these nurses just administer morphine and leave; they do not provide
psychosocial support to patients and their families, no matter how heavy
their burden. Viktor Bezrodny, for example, told us: “The nurse would
come into the corridor. I loaded the syringe… She took the empty
ampoule and we parted. She did not go to the patient.” (Human Rights
Watch interview with Viktor Bezrodny, April 15, 2010.)

Similarly, Katerina Potapenko, the 62-year-old wife of
Arkadi, a 63-year old patient with appendix cancer, told us that the nurses would
come to her house at 9 p.m., clean the area of the injection, administer the
shot, and leave. But the full burden of care-giving falls to her, an elderly
woman who had recently suffered a heart attack herself. She told us:
“I’m both doctor and nurse. I do everything [even though] I am
sick myself.” (Human Rights Watch and Rivne Branch of All-Ukrainian
Network of People Living with HIV interview with Katerina and Arkadi
Potapenko, April 20, 2010.)

For all its inadequacies for delivering pain
treatment, Ukraine’s visiting nurses system could form the basis for
providing comprehensive home-based palliative care services. With some
training, these visiting nurses could coach families in providing high
quality home-based care, including managing of pain and other physical
symptoms and addressing the psychosocial and spiritual needs of the patient.

[84]
UN Committee on Economic, Social and Cultural Rights, General Comment No.
14:The right to the highest attainable standard of health, November 8, 2000,
para. 12. The Committee on Economic, Social and Cultural Rights is the UN body
responsible for monitoring compliance with the International Covenant on
Economic, Social and Cultural Rights.

[88]
Formulary availability and regulatory barriers to accessibility of opioids for
cancer pain in Europe: a report from the ESMO/EAPC Opioid Policy Initiative, N.
I. Cherny, J. Baselga, F. de Conno and L. Radbruch, Annals of Oncology Volume
21, Issue 3 Pp. 615-626. This survey covered all European countries with
the exception of Armenia, Azerbaijan, Malta and San Marino. It did not cover
most Central Asian countries. Like Ukraine, Armenia and Azerbaijan do not have
any oral morphine.

[92]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with Svitlana Bulanova (not her real name), April 21, 2010.

[93]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with a nurse of of the central district hospital.

[94]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with the chief nurse at a polyclinic in Rivne, April 19,
2010; Human Rights Watch interview with doctor at hospice, April 23. 2010.

[95]
All-Ukrainian Network of People Living with HIV, Rivne branch, interview with
the chief doctor of the central district hospital in district 5, May 12, 2010.

[122]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with Roman Baranovskiy (not his real name), April 21, 2010.

[123]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with an oncologist at a hospital in Rivne, April 21, 2010.
While patients who have a history of treatment with promedol or omnopon
may require increased doses of morphine because they have built up some
tolerance to opioids, most doctors prescribe these medications in full ampoules
as well, without determining the right dose for the individual patient.

[126]
Human Rights Watch and Institute of Legal Research and Strategies interview
with a doctor at the hospice in Kharkiv, April 12, 2010. Email correspondence
with Liudmila Andrishina, chief doctor of the Ivano-Frankiivsk hospice,
February 25, 2011.

[127]
The findings of this survey will be published in a forthcoming Human Rights
Watch report on the global state of palliative care. The maximum dose in Turkey
is 200 mg of oral morphine.

[128]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living with
HIV interview with a doctor at a polyclinic in Rivne, April 19, 2010.

[129]
All-Ukrainian Network of People Living with HIV, Rivne branch, interview with
the chief doctor of the central district hospital in district 5, May 12, 2010.

[130]
Human Rights Watch and Rivne Branch of All-Ukrainian Network of People Living
with HIV interview with a doctor at a polyclinic in Rivne, April 19, 2010.

[131]
Human Rights Watch and Institute of Legal Research and Strategies interview
with the district oncologist in district 3, April 14, 2010.

[140]
UN Committee on Economic, Social and Cultural Rights, “Substantive Issues
Arising in the Implementation of the International Covenant on Economic, Social
and Cultural Rights,” General Comment No. 14, The Right to the Highest
Attainable Standard of Health, E/C.12/2000/4 (2000),
http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/40d009901358b0e2c1256915005090be?Opendocument
(accessed May 11, 2006), para. 12b.

[141]
Human Rights Watch and All-Ukrainian Council for the Rights and Safety of
Patients with Natalya Malinovska, Kiev, October 20, 2010.